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New to all of this.

Hi,
My husband was diagnosed with mild Crohn’s in 2019 after experiencing a bit of bleeding. He continued on with very mild symptoms and without treatment. Fast forward to this past March, he began experiencing a flare-up. He developed an abscess followed by a fistula. He ended up being admitted to the hospital early June. A CT Scan found severe inflammation throughout his entire colon. He spent 4 days there getting steroids, a blood transfusion and a Remicade infusion. He felt GREAT! There ended up being a miscommunication between the hospital and insurance and the continuation of Remicade did not get approved until 5 weeks after he was released. By this time he was tapering off of the prednisone and regressing quickly. He ended up back in the hospital. This time for 13 days. They did another CT scan which showed no change from the last time he was there. The GI at the hospital said it was the worst he’d ever seen. They did a scope and sent biopsies in to check for infection. He tested negative for both C-diff and CMV. They got him back on prednisone and he’s starting to feel good again. This time, he needed 2 blood transfusions and an iron infusion. He will be moving forward with Avosola. I’m not sure why they are doing that and not Remicade. Insurance reasons, I assume.

anyway, my fear is that as soon as he starts to taper off of the prednisone again, we’re going to be right back where we started and this with just become a vicious cycle. The GI at the hospital said worst case scenario, they do surgery to remove his colon but for us to not even think about that yet because we’re not even close to it being a thing right now.

I guess I’m just looking for some support or advice from more experienced people. My husband is taking things one day at a time but I have an anxiety disorder that causes me to obsess over the “what-if’s?” I’m concerned that this is going to totally take over and destroy his quality of life.

Looking for a light at the end of the tunnel.
 

my little penguin

Moderator
Staff member
Avolsola is a biosimilar to remicade
Does he have a regular Gi to see outside of the hospital ?
You can what if about a lot of things in life
Crohns takes time to figure out what works for the individual
This can be months
That said my kiddo was dx at 7
Started remicade at 8
And is now 19
Life just is
You would not even know he had crohns
He starts college soon and has been on Stelara plus methotrexate for 6 years now
Crohns can be managed
Life goes on
Just give it a minute to figure out what is best for your DH body .
Everyone is different
Lots of options med wise to try
 
Avolsola is a biosimilar to remicade
Does he have a regular Gi to see outside of the hospital ?
You can what if about a lot of things in life
Crohns takes time to figure out what works for the individual
This can be months
That said my kiddo was dx at 7
Started remicade at 8
And is now 19
Life just is
You would not even know he had crohns
He starts college soon and has been on Stelara plus methotrexate for 6 years now
Crohns can be managed
Life goes on
Just give it a minute to figure out what is best for your DH body .
Everyone is different
Lots of options med wise to try
He now has a GI that he will be checking in with. He has only seen him once so far though. It is very hard to get appts right now.
Thank you so much for the reply. Sounds like you’ve learned a lot along the way and I’m glad your son is doing so well!
 
Avolsola is a biosimilar to remicade
Does he have a regular Gi to see outside of the hospital ?
You can what if about a lot of things in life
Crohns takes time to figure out what works for the individual
This can be months
That said my kiddo was dx at 7
Started remicade at 8
And is now 19
Life just is
You would not even know he had crohns
He starts college soon and has been on Stelara plus methotrexate for 6 years now
Crohns can be managed
Life goes on
Just give it a minute to figure out what is best for your DH body .
Everyone is different
Lots of options med wise to try
This is reassuring. Thanks for sharing your son’s experience. My 11-yo daughter was recently dx with UC with suspected Crohn’s. 6 day stay at hospital, IV prednisone and protonix, then oral prednisone and omneprazole at home. Got started on Remicade. Hardest part is figuring out a diet but she seems to be onboard with the changes (she loves refined carbs lol). Hoping we can figure things out and she can live a normal life with minimal to no disruption.
 

my little penguin

Moderator
Staff member
Diet
Is just like diet for the general population-non crohns folks
Is varied widely by child /adult
Peptamen jr or kids pediasure are great added to a regular kid diet
Since they give the extra calories growing pre teens need especially when dealing with an auto immune disease
My young adult used peptamen jr , then neocate jr then later carnation instant breakfast as a supplement with a regular diet from age 7 till now (19)
He grew and gained when others with crohns had stunted growth
He is almost 6 ft tall and met his predicted height which per his specialist is unheard of in crohns kids dx so young
Other than that his diet has been typical and varied over the years
At 19 he eats a ton - including lots and lots of carbs /meat plus a carnation shake or two
 
I just purchased Pediasure for her. She is in the bottom 1% on the growth chart. And she’s been eating a lot more lately probably due to the prednisone. We are weaning her off - tonight we went down to 20 mg (from 30 mg for the 1st 5 days). Next 2 weeks she’ll take 20 mg/day then she’s done. I’m really curious to see how much she grows even though the Drs and nurses don’t believe the UC stunted her growth.
 
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